21 April 2012 7:11 PM

Lord Jack Ashley will always be an inspiration

I first heard about Lord Ashley of Stoke from a colleague of his in the House of Lords. With deafness in my family I was embarrassed that I didn't already know who he was. I was told that I was going deaf at the age of 32 and I later realised that it had a similar impact to the ‘being struck by lightning’ account used by Lord Ashley when he lost his hearing at the age of 45. For my part I thought I had got away with it. My father began to lose his hearing at 17; my grandmother had been older but my brother was in his early twenties when he noticed his hearing loss. Oddly enough it never occurred to me that I too would inherit the rogue genes, so when the diagnosis came it arrived as a thunderbolt. What had begun as dizziness then turned into tinnitus (I still ‘hear’ non-existent lorries outside my house have constant burglar-alarm-type distant ringing in my ears) led me to the ENT specialist who with characteristic NHS detachment told me it was obvious wasn’t it, I was going deaf. The world, for a moment, ceased to turn. I began to think of all the career limiting affects this could have and I confided my concerns in Lord McColl, who like Lord Ashley, has been a tireless campaigner for disability rights. Don’t you know about Jack?, he said as he pulled Lord Ashley’s biography off his bookshelf and handed it to me.

Most people with disabilities don’t like to be singled out. We don’t want to be defined by them, nor do we want to be unnecessarily limited by them. Pity is repulsive but so is indifference. Modifications have to be made, many of them ironically simply good manners. I need you to look at me when you speak to me, and don’t judge me when I don’t laugh at your joke (that I didn’t hear correctly!)

Jack Ashley was in another league. He had lost all his hearing when already an MP at Westminster and relied totally on lip-reading until he had a cochlear implant in 1994. I don’t know if he had a heart for those with disabilities before he himself was afflicted, but his achievements post-hearing were superlative. It was his support for children who had been disabled by thalidomide that ensured they obtained improved compensation. He campaigned tirelessly for those who were deaf or blind and founded the Deafness Research UK charity. He also pioneered live captioning on TV which for profoundly deaf people like my dad, transformed their ability to enjoy current affairs on ‘the box’.

There are few compensations with deafness. You can switch off your hearing aids and concentrate better; you can turn a genuine ‘not hearing’ moment around and say ‘well I didn’t hear that but what I would like to say is..!) But the loss is far greater than the gain, and it’s tiring, straining to hear and participate. It doesn’t mean you can’t though, you find solutions and the way Lord Ashley invested his political life in finding keys to seemingly locked doors is inspirational. Westminster is an unforgiving place, so his accomplishments are all the more impressive. Knowing his story has encouraged not only me but I am sure thousands of others too. His political advantage? Maybe it’s that when you are deaf, there is no hearing without listening.

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JULIA MANNING

Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer in at City University, visiting clinician at the Royal Free Hospital, working with Primary Care Trusts and a Director of the UK Institute of Optometry. She also specialised in diabetes and founded Julia Manning Eyecare, a practice for people with mental and physical disabilities. In 2006 she established 2020health.org, an independent Think Tank for Health and Technology. Research publications have covered public health, telehealth, workability, pricing of medicines, biotechology, NHS reform and fraud.